Monday, March 30, 2015

A strong, active man in his sixties, he had been struggling and fighting for months—in and out of the hospital experiencing chemotherapy, radiation, and a long-term-care stay. He was suffering from cancer, pneumonia, and multi-system failure. He was my father-in-law and he would live for hours, or a few days.

We knew his end-of-life wishes from the Advanced Directive and Living Will he had signed. So we were shocked when his primary care physician said, “If you three sisters agree, I’ll do everything I can.” It seemed that she was ignoring my father-in-law’s decisions and dropping all of the guilt and indecision back on the patient’s daughters. Confused and bewildered they agreed to a family meeting. A different physician attended. “There is nothing more to do,” he explained gently. “No other treatment will extend or improve his quality of life.” His suggestion: turn off the machines and use comfort measures.

My father-in-law spent the next hour surrounded by family. He never regained consciousness. With his hands being held, in a comfortable, quiet, peaceful, loving environment, he died.
I have nothing but admiration and affection for these doctors. I know each was suggesting what he or she thought was the best treatment option. But why was it so hard for the primary care physician to give the news to our family? Why did the news from the second physician seem to be such a shock for us? End-of-life discussions are so difficult, but also so necessary.

PBS’s recent documentary, “Being Mortal,” opens the window into the often excruciating choices that doctors need to make. Tell a 34-year-old mother with stage four lung cancer to forego chemotherapy so she can hold her newborn? In his best-selling book of the same name, Dr. Atul Gawande bravely admits that he would have talked differently with this patient and many others. But, he says, for doctors, conceding that a patient might be better off stopping curative treatment is declaring defeat.

It’s no wonder. Doctors are trained to keep people alive. But Gawande is helping change the conversation about death and dying in America. It’s not just about mortality. It’s not just about living longer. It’s about understanding patients’ wishes. It’s about living better.

Today is National Doctor’s Day. Established in 1991 by President George H. W. Bush, it’s a day to recognize the sacrifice of the men and women who carry on the quiet work of healing. It’s also a day to recognize the heavy emotional burden that doctors carry, and the struggle many of them face talking about mortality.
It takes a strong dose of understanding and a great deal of courage to shift the conversation from treatment to other options, especially when physicians sense the patient isn’t ready. In fact, according to the Institute of Medicine’s recent Dying in America report, one out of four adults has given little or no thought to end-of-life wishes. Fewer have communicated their wishes in writing or through conversation. Doctors are picking up on our reluctance to admit that we’re not going to live forever.

Ironically, other research shows that both consumers and physicians would like to talk sooner rather than later. In our comprehensive Hospice Care survey of consumers and physicians across America, Crossroads Hospice found that one out of three doctors and patients say they’d like to have the hospice conversation at the time of diagnosis or the start of treatment. Yet only one out of five physicians we surveyed actually starts the conversation then.

Doctors are totally human. Doctors are optimistic. Doctors are relentless in their search for answers. Understandably, many doctors are reluctant to discuss hospice because they feel they are giving up on a patient. But hospice isn’t about giving up hope. It’s about creating hope-filled experiences for the patient at the end of life’s journey.

Today is a day to thank Dr. Gawande and other physicians who are advocating for earlier end-of-life conversations between doctors and patients. It’s a day to thank doctors for their willingness to speak to patients with compassion and honesty about their options. And it’s a day for all of us to remember to share your hopes, your fears, and yes, your end-of-life wishes with those you love and love you back.

Perry Farmer is the President and Co-Founder of Crossroads Hospice, the fifth-largest hospice company in the United States. This piece was simultaneously published here and the Philadelphia Inquirer.

Pallimed: A Hospice & Palliative Medicine Blog Founded June 8, 2005.
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